Living with palliative care when to ask

Overview

Palliative care is specialized medical care for people living with a serious illness. Its goal is to relieve symptoms, pain, and stress so you can have the best possible quality of life. It can be provided at any stage of illness and can be given alongside treatments aimed at curing or controlling the disease.

Palliative care is available in many countries, but access varies. Research suggests that over 40 million people worldwide need palliative care each year, yet many do not receive it.

It can help people of any age with a serious or life-limiting illness, including heart failure, cancer, lung disease, kidney failure, and neurological conditions such as dementia or Parkinson's disease.

Symptoms

Common symptoms

• Persistent pain that is hard to control with current medications
• Frequent breathlessness, fatigue, or weakness that affects daily activities
• Difficulty eating, swallowing, or unintentional weight loss
• Anxiety, sadness, or difficulty coping with your illness
• Repeated hospital stays or trips to the emergency room

Symptoms in children

• Ongoing pain or discomfort that is not well controlled
• Trouble sleeping, irritability, or changes in mood
• Loss of appetite or difficulty gaining weight
• Frequent infections or illness that limits normal activities

Symptoms in older adults

• Increased confusion or memory problems
• Difficulty with everyday tasks such as bathing, dressing, or moving around
• A decline in strength and energy
• Growing dependence on family members or carers for daily needs

Causes

Main causes

• Serious or advanced illnesses such as cancer, heart failure, chronic lung disease, kidney failure, liver disease, or neurological conditions
• Diseases that cause progressive decline in strength and function
• Life-limiting conditions in children, such as certain genetic or metabolic disorders

Risk factors

• Having a chronic, progressive illness
• Older age and frailty
• Multiple hospitalizations or frequent emergency visits
• Symptoms that are difficult to manage

When to see a doctor

See a doctor urgently if:

• Call your care team if you have new or severe symptoms that are not controlled
• Reach out the same day if you feel suddenly worse or cannot manage at home

Book a routine appointment if:

• If your current treatment is not controlling your symptoms, ask for a palliative care assessment
• If you have questions about the future and want to talk about what care options are right for you

Diagnosis

Palliative care is not a disease that is diagnosed. You or your doctor may request a referral. The palliative care team evaluates your symptoms, your illness, and your care goals to create a personalized plan.

Tests that may be done

• There are no specific tests to diagnose the need for palliative care.
• The team may review your medical records, perform a physical exam, and use symptom questionnaires.
• Blood tests or imaging may be used to understand your condition better, depending on your situation.

What to expect at your appointment

A palliative care specialist will talk with you and your family about how you are feeling, what matters to you, and what kind of help you need. They work together with your own doctors to support your care.

Treatment

The focus of palliative care is to relieve symptoms and improve quality of life. It does not replace your main treatment; it works alongside it.

Self-care at home

• Take medicines as prescribed and keep a symptom diary
• Pace your daily activities and rest when you need to
• Try relaxation techniques such as deep breathing or mindfulness
• Talk openly with your family and care team about your concerns
• Plan for future care wishes with an advance care plan

Medical treatments

Palliative treatment may include medicines to control pain, nausea, breathlessness, or anxiety; procedures to drain fluid or relieve blockages; physical therapy; and emotional or spiritual support. The exact approach depends on your illness and needs. Your care team will explain the options and benefits.

When is surgery considered?

Surgery is not usually part of palliative care, but sometimes a small procedure may help relieve symptoms, such as draining fluid or placing a feeding tube for comfort.

Living with this condition

A palliative care team helps you coordinate care, so you can spend more time at home and less time in hospital. They can arrange home visits, equipment, and support for family carers.

Lifestyle tips

• Stay as active as your condition allows
• Eat small, frequent meals if you have little appetite
• Keep social connections with people who bring you comfort
• Create a calm and safe environment at home
• Plan activities around your energy levels

Diet and exercise

You may need to adjust your diet to manage symptoms like swallowing problems or weight loss. A dietitian can give personalized advice. Light exercise, such as short walks or stretching, can help maintain strength and mood, but always talk to your doctor or physiotherapist before starting.

Mental health and emotional wellbeing

Living with a serious illness can be emotionally heavy. Palliative care includes emotional support and often access to counsellors or psychologists. It is normal to feel anxious, sad, or frightened. These feelings are part of the journey, and help is available.

Prevention

Palliative care cannot prevent the underlying illness, but it can prevent unnecessary suffering by proactively managing symptoms and supporting quality of life. Early referral gives you more time to benefit.

Vaccines

Staying up to date with recommended vaccinations can help prevent infections that may complicate your illness. Ask your healthcare team which vaccines are right for you.

Screening programmes

There are no screening tests for palliative care. Ask your doctor for a palliative care assessment if your illness is causing troublesome symptoms or limiting your daily life.

Complications

If left untreated

• Uncontrolled pain or other symptoms can lead to emergency hospital visits
• Increased stress and burnout for family caregivers
• Missed opportunities to talk about your wishes for care

Long-term outlook

Palliative care can significantly improve quality of life, and sometimes even help people live longer. It offers a compassionate, realistic approach to living with serious illness, with support for you and your loved ones along the way.

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